MD Support Group (and DC and VA if you want to drive)

Hello Marylanders!

So, we have noticed a good number of new members hailing from Maryland (and DC and Northern Virginia) since we held our last support group meeting...exciting!

We are trying to plan a meeting in January (after the craziness of the holidays), but we are not certain of how large a group we have become.

So, here's what I need to know:

1) Are you interested in participating in a support group meeting in January?

2) What do you hope to get from or achieve in the support group?

So exciting to get to know each one you! A true joy!

This is not a commitment of showing up, but we really need a better idea of our numbers in order to even if you can't join us in January, let us know you are out there!

Report post

51 replies. Join the discussion

You are welcome to come, Cindy, to this meeting or any future ones!

Report post

Will you please add me to the list? I don't know how to private message you but would like to receive the list. I'm still waiting to hear from Dr. Henderson's office if I can have an appointment. It's too painful to be on the computer too long, so my emails are short.

Mei Mei

Report post

I have already missed the January date but I am interested in finding a support group for my 17½ year old daughter. She was diagnosed with POTS in 2007,and EDS just 5 months ago. She has excruitating pain and too many dislocations daily. If anyone knows of a group or can share some info please let me know. Thank you.

Report post

Hi Franniesmom!

The next meeting should be in April so watch the board for the should be posted soon. We would love to welcome you and your daughter!

Report post

Sorry I missed the meeting, it was a rough day! Can you post a recap for those of us who couldn't make it?

Report post

Hi Megan...we were looking for you and were missing you! So sorry you were having a rough day!

It was a fantastic meeting! We had 32 EDSers, husbands, boyfriends, mothers, and siblings join us.

After a brief introduction of myself and SmileMommy where we encouraged folks to use push pins to mark their locations on a map and complete a form suggesting doctors and therapists, Richie (Secretary of EDNF Board of Directors) gave a brief overview of EDNF and the Learning Conference. We next described the agenda for the meeting, which everyone could see on their handout.

We then broke into small groups to discuss our greatest challenges with EDS or being a caregiver of an EDSer and our best tips for living with EDS or caring for EDSers. Challenges ranged from the unpredictability of symptoms to maintaining friendships. Tips ranged from medic alert options to caregivers taking care of themselves well in order to be well enough to care for the EDSer(s).

When we reconvened into a large group, I demonstrated one possible method of organizing records and materials for easy access at doctor appointments and Red_Balloon demonstrated Pen Agains, a Body Back Buddy, and methods to get pelvis and ribs back into place. We finished by handing out a survey to find out the wishes of what the group would like covered in future meetings.

We then mingled with each other, making new friends and tips and experiences. The map was a wonderful tool to find EDSers who live close to each of us.

It was a wonderful day filled with such wonderful people. We are already busy making plans for the next meeting and hoping that you will be able to come to it!

This group holds a ton of wisdom and experience combined with the wonderful energy and support of the newly diagnosed...conversations flowed easily and I think everyone left with at least one great new piece of hope or information that can help their lives be better. And hopefully that wonderful sense of sharing and support will be brought to all the meetings to come!


Report post

Looking forward to joining you all next time. We live in DC but Sounds as though it was worth the shorty drive. Thanks and keep us updated on the next meeting.

Report post

I thought this might be a good place to post a question for those in Maryland, in particular...

Can anyone recommend a physical therapist anywhere near Columbia? We don't mind a bit of a drive if necessary - though if we have to drive a ways, I'd prefer it be in the direction of Towson or Severn (relatives there).

My daughter (10) is to start physical therapy for chronic neck pain & headache and we are considering just doing it from our temporary apartment in Columbia rather than our home in Virginia. She *really* wants a *lady* - but will consider a guy if it's not "an old man" --- though to her, apparently, an old man might be anyone over, say, 40. ;)

(She does not have an EDS dx at this time...but several markers, and I see a geneticist back home (VA) this week.)

Report post

Hello Humbled Pie,

If you can message me with your email address, I will send to you the doctors list that has been compiled thus far. It includes pt's that EDSers have gone to and who they felt gave good to excellent service.

We are fortunate to have many wonderful doctors and therapists in Maryland!

Report post

My husband lives in DC so I want him to go with me to the next meeting so he can begin to understand this disease a little more. I cant wait to meet others like me, hehe!

Report post

Great! The next meeting is April 15th! See you then :-)

Report post

This discussion is closed to replies. We close all discussions after 90 days.

If there's something you'd like to discuss, click below to start a new discussion.

Things you can do

Support EDNF

Help the Ehlers-Danlos National Foundation reach its goals and support people like yourself by making a donation today.

Donate to the Ehlers-Danlos National Foundation

Discussion topics

Community leaders